Thursday, January 31, 2013

Preventing Illness: To Mask or Not to Mask

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Why don't people who are sick wear face masks?

I began thinking about this question over the weekend when faced with what I viewed as a real health hazard.

My wonderful husband surprised me with tickets to a comedy show on Saturday night.  He must have sensed that I was getting a bit stir crazy with last week's super cold weather that had been keeping me indoors.  I definitely needed an outing and a change in my surroundings. 

The show was lots of fun except there was one problem.  The person sitting right behind us coughed the entire time and to make it worse she did not cover her mouth. Being the gentleman that he is, my husband switched seats with me so he would be directly in the path of all those wonderful droplets filled with germs that this woman was spreading every time she coughed.  

If you are anything like me, I am extremely careful about trying not to get sick. There is of course good reason for this -- I have always gotten sick easily even before my Sjogren's diagnosis and like many others with autoimmune disease I am often on medicines like steroids that makes me immuno-compromised (and more likely to get sick).  I have also found that for me getting sick can cause a flare, and when I do get sick it can be really hard for me to get better. My friends and family know when they are sick that I do not want to see them and to stay far far away!

Back to my story… we contemplated leaving the comedy performance early, but we were having such a good time I didn't want to.  It was actually funny! My ad-hoc solution was to cover my mouth and nose with my winter scarf and keep my head down for most of the performance.  I was already sporting my movie star look with big dark sunglasses since my eyes have been very light sensitive recently, so they were at least somewhat protected.  I might have looked ridiculous, but I will go to great lengths to avoid getting sick.  

It was shocking to me how inconsiderate this person was.  As far as I am concerned, if you don't have the decency not to go out in public and contaminate other people, at least have the decency to cover your mouth.

This incident also reminded me of when my husband and I were in Asia a number of years ago and we saw people wearing face masks. We asked one of our friends in Hong Kong about this and were told that when people get a cold or the flu there, they often wear a mask to prevent spreading their illness to others. This is a very simple solution and it seems that it would at least help prevent the transmission of illness especially during flu season. I am not sure why people in the United States haven't adopted this practice more.  I suppose that it is because it is not culturally acceptable.  It is odd to me that it is not.

The next question that I have heard is why not just wear a mask in public if you are healthy to avoid getting sick?  Well, it appears that doesn't help nearly as much. While a mask might help somewhat, the evidence seems to be more robust that a mask is most effective when worn by the person who is sick.  According to a CDC flu advisory: "Facemasks help stop droplets from beings spread by the person wearing them. They also keep splashes or sprays from reaching the mouth and nose of the person wearing them. They are not designed to protect against breathing in the very small particle aerosols that may contain viruses."

So while wearing a mask might be better than nothing when around someone who is sick, the mask is most effective when worn by the person who is ill.  Of course vigorous hand washing, blocking sneezes and coughs with a tissue or your elbow, and staying home when you are sick are the best ways to avoid spreading viruses such as the flu.

Obviously sometimes when you are sick, it is impossible to stay home with the demands of work and daily life.  However, to go to a crowded theater when ill and coughing without taking any precautions to protect those around you is another story. I do hope that it becomes more culturally acceptable in the US to wear a mask when you are sick and need to be out in public.  Because if you wear one now, you will stick out enough that you will be the recipient of many stares. 

What do you think?  Would you wear a mask in public if you had a cold or the flu?

Friday, January 25, 2013

Living with Autoimmune Disease: Yoga I Did It

A few months ago, I wrote a post about the disappointment of not being able to attend my first yoga class in a number of years... despite my careful and meticulous planning to make sure I would be to make it.  Yesterday, it was a different story.  I made it to the yoga class!!!

I have been hoping to go to yoga for almost two months, but even the day of I didn't know if it would be possible.  The stars seemed to be aligning against me. The previous day was tough and I was in lots of neurological pain.  More broadly, I am in the midst of a flare and am more limited in what I can do than I have been for awhile.  Making matters worse, the weather was absolutely frigid.  Somehow, somehow, my body cooperated just enough. I made it.

It was my first gym or exercise class of any kind in three and a half years.  That's long for anyone, but for me that's a reminder of just how hard things have been. Before getting sick, I had always regularly exercised in some way whether it was dance, yoga, or running. Exercise used to be my release and my means of getting rid of my excess energy.  Yes, before becoming AutoimmuneGal, I was a hyperactive gal.

I approached the possibility of attending the class casually.  I didn't even put it in my calendar.  I was fatigued by the time the afternoon rolled around yesterday, but I decided to push through this time. It was worth it.

Perfect Plough Pose

The class was designed for people with arthritis. Ok, that doesn't exactly fit me, but I figured the teacher wouldn't push me past what I could do. I walked in and was the youngest in the room by decades.  Sometimes I say that I feel like having autoimmune disease means that I have a sense of what it is like to be in my 70s (even though I am only in my 30s). In that class it was literally true.

The class was pretty low impact, which is exactly what I needed.  The hour and half class consisted mostly of gently stretching, slow movements, deep breathing and meditation.  The teacher carefully guided us through the postures and helped us individually to make adjustments so none of them were painful.  It felt good to slowly move my rusty muscles and joints that I haven't focused on in ages.   I could feel them working hard even to hold basic poses.  I recognized many of the poses as lying downs versions of standing poses that I had done in my previous practice.  And while I used to do things like headstands, I found the low key, relaxing and supportive atmosphere of a restorative yoga class enjoyable.

The best part is that I left class feeling less fatigue than when I started.  If restorative yoga is something that I can do when I am flaring I certainly feel like I can plan to be back for more. This was a big accomplishment for me and I do hope I will be able to incorporate some gentle exercise into my life again on a regular basis.

Friday, January 18, 2013

The Power of Pictures: Doctors Visits for Autoimmune Patients

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I recently had an appointment with my primary care physician (PCP) and it got me thinking about one of the strategies that I have developed over the last year to make my doctors visits and medical care in general more effective. It's pretty simple in the age of the smartphone: taking pictures.

While it might sound trivial or even silly, let me explain.  With autoimmune disease, like with many chronic illnesses, symptoms can fluctuate with little notice and new symptoms may unexpectedly emerge.  Often times these are symptoms which manifest themselves in ways that can easily be seen, but may only be visible for limited amounts of time. Rarely am I lucky enough to have an already scheduled appointment with my rheumatologist or PCP when one of these occurrences happens.

I was frustrated on several occasions when trying to describe a symptom to a doctor that they clearly did not understand. In some cases I just don't think they believed me; in others, it was a condition which would be hard to describe.

I now have a plan. When something new happens that has a visible manifestation--whether it be a swollen joint, a new rash, an eye that doesn't move correctly, or a puffy face--I take a picture. If the medical issue is pressing, I can then email my physician the picture (if they allow email communication) or I can simply have it available on my phone for my next appointment.

I've had doctors tell me seeing a picture isn't necessary but then I show it to them...and, sure enough, it always makes a difference. I guess it's human nature: "seeing is believing".

I have found this has made a major difference on several occasions in terms of how a doctor evaluated my symptoms.  It is hard for a doctor to deny a medical problem or attribute it to a patient's imagination, when a picture is right in front of them.

Pictures have been critical for my allergist to confirm that I again have a condition called angioedema.  While it was suspected, my face or lips were never in the process of  fully swelling while I was in the office.  Upon showing pictures of my face blown up like a balloon led my allergist to say  "it is definitively angioedema" and my PCP to say "oh my God" in shock about how bad it can become.

Photos have also helped my doctors treating me for blepharitis, rosacea, and some additional neurological complications of autoimmune disease to name just a few.  Of course I am not suggesting my smartphone photos replace an in person medical exam, but they give my doctors additional information and evidence to work with.  It has meant in on more than one occasion that my doctors have taken my symptoms more seriously and treated me more quickly.  I guess my smartphone has become my means of medical documentation.

Now at first, I wasn't sure how my doctors would react.  Afterall, some could see my documentation as somehow showing a lack of faith in their diagnostic skills.  However, I have even found that many of my doctors have come to appreciate my active participation in helping them to diagnose and treat me.

It my sound cliche, but in dealing with the complications of my health and trying to work with my doctors a picture can really be worth a thousand words (and more).

Tuesday, January 15, 2013

Can My Eyes Really Get Drier?

Sahara Desert

Although I did not think it was possible, my eyes have actually gotten drier.  I guess we’ve moved from a regional desert to the Sahara.

Now, my eye history is long and complicated. My symptoms are made worse due to a previous corneal infection and subsequent scarring, which my doctors attribute to Sjogren's. I also have had uveitits, another serious eye condition which needs to be kept under control or can lead to vision loss. I also have seriously dry eyes, related to my Sjogren’s as well.

Last week, my eyes started to really bother me in a way I have come to associate with serious flares. I became extremely sensitive to light (again!, but it had been a while) and developed constant eye pain, to the point that putting in my usual preservative free drops in my eyes was quite painful.  My right eye became so uncomfortable that I had to use an eye patch just to watch TV. Looking at a computer screen was out of the question.

Generally, when I have a flare up, I put extra drops in my eyes. This time that made my eye hurt more, so I immediately became particularly concerned.

Early Sunday morning my husband I bundled up and trundled off to the emergency eye clinic, where my doctor wants me to go if anything out of the ordinary happens to my eyes.

The good news is that there was nothing requiring emergency care like a flare of my uveitis or an infection.  However, the doctor did notice that my eyes particularly the right eye was extremely dry to the extent that the layer that covers the front of the cornea or corneal epithelium had been effected. This extreme dryness she explained was why I could not put drops in my eye without pain; dryness this severe can feel like a corneal abrasion. Ouch! 

Of course, my blepharitis and ocular rosacea were also simultaneously in full force, which also contributes to eye discomfort. 

The doctor suggested using my nighttime eye ointment (my preference is Refresh P.M. Sensitive but there are a number available) frequently during the day to improve the lubrication, more warm eye soaks, and re-starting steroid eye drops. It was a bit of a surprise to me that my eyes could still be so dry given how much time and how many steps I take each day trying to keep them moist. I guess that is what happens with Sjogren's.

I thought I would share my daily growing eye care routine for my dry eyes and blepharitis.  
What do you do everyday to help combat your dry eyes?

~ Preservative free drops about 8 to 9 times a day.

~ Restasis 4 times a day as prescribed by my doctor

~ Steroid eye drops as prescribed by my doctor

~ Warm eye soaks 2 times a day.

~ Ocusoft lid cleanser

~ Preservative free nighttime eye ointment

~ Humidification every night for dryness